Saturday, January 31, 2009

I decided to look back in the January's of the years past since Daniel.

January 2009 : Unfortunately we got bad news this month that Daniel is having seizures again. Infantile Spasms. Not what we wanted to hear.

January 2008: Looked back and almost 1 year to the date of our EEG in 2009 was the one in 2008. Oddly enough I still have this happening to me too! And yes this still happens to Daniel.

January 2007: This year we were frantically planning the two fundraisers we were having for Daniel. Busy times. We had some really great support. We even made it to the big time and Rob over at Schuyler's Monster gave us a little shout. We even made it to Mr. "Fancy Pants" side bar with a link to our site. All before he became the Mr. Fancy Pants that he is now! :)We are still grateful for all the hits he generated for us.

January 2006: Daniel was diagnosed with Infantile Spasms and we were fighting to get them under control. We switches neurologists and started going to the best of the best for Infantile Spasms. Daniel was also diagnosed with his brain malformation called CBPS (Congenital Bilateral Perisylvian Syndrome) also known as BPP (Bilateral PerisylvianPolymicrogyria).

January 2005: Daniel was still being made! Sometime during the first trimester is when Daniel's brain didn't develop properly.

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Here is a photo of a little boy and his new crown. Meet Jack. Isn't he a cutie?!?

Friday, January 30, 2009

If you've been following the post this past couple of weeks, you know that Daniel has been re-diagnosed with Infantile Spasms.

Being in SHOCK is an understatement.Being in denial? Perhaps.Grasping at straws? You bet.Researching again? Hours upon hours!

Trying to come out of the fog I've been in since I heard the nurse practitioner say Infantile Spasms.I just lay in bed at night and something doesn't feel right this time. The other two times Daniel had the seizures, I was like ok, I see them I understand. Not so much this time. There are too many things that just don't fit this time around. Now mind you, some of you will probably read this and say to yourself, "that poor girl, she just needs to come to the reality that Daniel is having seizures, and let it go, move on." And to that I say you might be right, but until I can get this nagging feeling to go away, I can't put it to bed yet.

This is what is odd (in my book)

no new outward appearance of clusters/seizures

the movement that we did push the video button on in the EEG we have pushed on 4 different EEG's previously and we were told they WERE NOT seizures.

there is no hyppsarrythmia

there seems to be no regression, only slow progress which is typical for Daniel

there are two parts to the VMR. The actual EEG and then the video recording. We found out that only the EEG is looked at through a computer program then a doctor reviews if anything is found through that detection. They only review the video if the parents push the button when they see a funny movement. That being said, it is my understanding that from the review of the EEG, there were spikes but they did NOT see seizures. Only upon review of the video (where we hit the button) did the doctor who read the report call it IS. because of the 'movement' only. Not completely based off the EEG. (see report under Interictal Findings).

Also note under Clinical Findings (meaning the video) the report reads: These spasms showed minimal EEG correlation or sometimes the EEG correlation was obscured by EMG activity. Some spasms showed diffuse spike wave activity followed by attenuation. We would not localize the seizure onset..

To me this means; had they been looking at just the EEG they would not have seen a seizure. and that when the movements of the video happened there was little or NO correlation with the EEG. Now mind you yes Daniel is doing a movement, but one that he has ALWAYS done. So if this is indeed a seizure, he was never really seizure free EVER. and if it is Infantile Spasms- I can induce this seizure. I can tell you when and why Daniel does the movement. I can make it happen and I can stop it instantly. If this is a seizure, why am I am to do that?

I know grasping at straws, and its all confusing for people to read. I an not saying Daniel isn't having seizrues of some kind, or he has a high potential. We have always know this because of his brain malformation he will never have an absolutely perfect EEG, its impossible. He has spikes, which means there is potential for seizure activity. There are no hypps. When he was having the "seizure" (odd movement) it didn't cooralate with the EEG. I can induce it. Seizures?? Maybe, but I need more to think that it is infantile spasms again.

But who am I? I am not a doctor and I am new to this (3 yrs only) seizure stuff. I have researched a ton, but again I am not a doctor and I don't pretend to be one. But it is a gut feeling that i have, and I am around him pretty much all the time. I am his mom, and yeah probably grasping at straws.

But wouldn't you too?

We have an appointment on Tuesday with the neuro. Then I will point out all my thoughts and he'll probably think I'm nuts....

Thursday, January 29, 2009

Sometimes all it takes during the day is for someone to acknowledge that I am not up to par, give me a hug and walk away. Enough said, enough done....and I immediately feel better, I don't feel so alone.

Sometimes as I watch Daniel to see if there is any odd movements, he'll catch me. All he needs to do is smile at me or snuggle into my shoulder....and I immediately feel better, I know he'll be ok.

Sometimes all it takes is a couple seconds for the hug, the smile, the snuggles/nuzzles...and the day is better.

Thats all it takes......But somedays we must pull out the big guns and get a whacked out bedhead hair do to make me giggle!!

Wednesday, January 28, 2009

Well, after the horrible week we had last week, its about time for some good news.

A few weeks ago Daniel got his new "big boy" wheelchair. The Ti-Lite. We are getting some adjustment to it to tweak it and get it aligned for Daniel's body, but all I can say is WOW! It is very light weight and he looks like a little boy now. Who took my chubby little baby boy? It's nice that it is so light weight as it makes it so much easier for teaching Daniel to move it on his own. You barely have to move the wheels to make it go.Also, we found out that we will finally be getting Daniel's augmentative device. We tried a ton of different ones out months and months ago and decided that the one with the most growth potential, and a screen sensitive enough for Daniel's light touch was by PRC. So, by the end of February I should be reporting about how much he will be communicating with us using his own computer. Now we just need to go to some training classes and learn how the whole thing works and all the wonderful things it can do. We are also having the rep for the company add additional voices to the ECO-14 for us. This way Daniel will sound like a little boy should and not a 40 yr old man or a robot!The other great thing that is happening is we are continuing to get orders in for our party crowns that we have been making. In the past few weeks we have gotten some large orders and I can say that it has helped keep my mind off of the return of the seizures. Also, off of the fact that the medication we are giving him is making him more limp, irritable and tired. It's just his body getting use to it but, needless to say, it still sucks. So, we've got orders around and a couple large ones too! We have even got requests for St. Patrick Day crowns (see link above). We will also be putting them into some local stores and they will be advertised that all proceeds will go towards Daniel's ABR therapy. We even have a custom order for a newborn baby!! Can't wait to make that one! We are very excited to be able to supplement the costs of ABR through hand sewing the hats. I keep saying "we", because since we have gotten so many orders, I have taught Lonnie (yes Lonnie) how to sew!!! Next I'm going to teach Daniel! HA HA HA

Here are a couple pictures from happy customers! Mohammed (orange crown), bought some to celebrate his birthday. He and his friends all participated in a 50k run and celebrated his birthday by wearing the crowns for the complete run. Pretty cool. A very nice guy and we appreciate the order!

So, that is the good news!! And here is what happened to Daniel's male guinea pig when he went and got his nails clipped!! We thought it was humorous. A red bow for Valentines Day.

Saturday, January 24, 2009

This past week has returned us to the beginning of the road on this journey that I don't want to be on anymore. We've been here before and I hate it.I thought we were done with this Infantile Spasms stuff.

I am having a really hard time with this. I feel like I did when we got our first diagnosis at 4 mos old. I feel like my "amended" dreams that I have for Daniel after his original diagnosis are getting edited too. God's up there yelling "STOP!!! Things are going too well for this kid, lets spice it up a little". I'm revisiting steps that I have already passed. I am scared, and I am grieving because yet again, we are made to change our dream.

I let my guard down. Maybe I boasted too much about how well Daniel was doing, even with the crappy mixture of "disabilities" he has. Maybe I gloated, bragged, or spoke that Daniel is such a strong fighter. And God heard me, and has decided that yes Daniel is a strong fighter, but lets see what breaks his mother. I don't understand. Punishment of some sort? Don't punish my child for something I did. If I could give Daniel a life where living wasn't always a fight, in exchange for eternal punishments against me....sign me up, I'll do it, within a blink of the eye.

John 9:1-3As he went along, he saw a man blind from birth. His disciples ask him, "Who sinned, this man or his parents, that he was born blind?""Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

I am not sure that I can grasp this new set back. I'm not sure I can get back off the ground. I feel defeated. He has progressed so far since he regressed from the first onset of the IS. He even fought back a second time without a ton of regression. But come on...this is the 3rd time. And it is so unexpected. I can't understand it. WE HAD NO CLUE.

This is when my guilt comes into play. How could I not know? Where is my motherly instincts? We just went for a routine EEG to check up. I held him most of the 24 hours, I watched him. I saw NOTHING. How can that be? Infantile Spasms, are severe seizures, watch the videos you see on the internet. He didn't do anything like that. He did NOTHING that would classify as a "cluster" of seizures. Infantile Spasms come in clusters that is one of the main characteristics of them. Another is the Hyppsarrythmia. This is seen on the EEG and for Daniel there is no Hyppsarrythmia. How is that possible? I just feel like we keep getting kicked in the stomach with every turn. He has no hyps, and very, very subtle if any outward appearance of seizures. ( I am actually going to meet with the EEG department on Monday so I can watch the video and they can show me what he does. They say unless they were reading the EEG, they wouldn't have known it was a seizure.) We have no idea how long he has been having seizures (no more than 4 months, because that was the last 30 minute EEG). We have no idea WHEN he is having them, they aren't the typical jack knife type seizures. He doesn't cry or get cranky or sleepy (that we know of), and there has been no regression (yet). He has been progressing actually, besides this he is doing really well.

So, its not whether you get knocked down, its whether you get back up again. And I am having an awful time of it. I want to be there and be strong for Daniel, but I just don't understand WHY this is happening again.

I get up in the morning and put on the smile, pretend I am strong and hum "I Will Survive" but on the inside I am screaming in terror, afraid to fall asleep, scared I'm going to wake up to my son, and I will have lost him yet again to something that is basically out of my control. How do I protect him?

When you get to the end of your rope, its whether you make a noose or you tie a knot and hang on. I'm trying to hang on for Daniel...but I don't want to do this crap anymore, I can't keep fighting a monster that is currently kickin' my ass.

Tuesday, January 20, 2009

Infantile Spasms are BACKNOT GOODWe only have the preliminary report so no real concrete details.This just blows more than I can say.Starting anti-seizure medicine tonight.I don't even know what the seizures look like, the things I thought we possibly seizures were not.I feel like I am fighting against an invisible f'ing creature.I don't know what I'm looking for, so scared that he will regress again back to infant state.

So sad right now I don't even know what to do, just wandering lost.Please say a few prayers for Daniel.

Saturday, January 17, 2009

Well both Lonnie and I survived the EEG. BARELY!! It sucks not being able to sleep during the EEG.

I haven't been in the greatest frame of mind this past week.I can't stand waiting for results of tests.Why can't they just have someone on hand that can read the results right away?I think they get pleasure from torturing us during the wait.I just have a weird bad vibe about this EEG. We pushed the button on all the weird movements that we think might be seizures. I am crossing my fingers and hoping with everything in me that they aren't seizures, that they are just little Daniel quirky movements. I know....THINK POSITIVE!!

On the other hand I've been real busy this week with a large order of the felt crowns that I am making. (See side bar for felt crowns). I had posted a photo of Daniel wearing his crown and got a few people asking about them. Word of mouth, and I got a few orders, 20 plus crowns in a week!~! We were sewing freaks at the house, as they are all done by hand. LOL God forbid anyone stopped by my house cause its a complete disaster with fabric and felt all over the place!

But its a good amount towards Daniel's ABR therapy. So if you know anyone who is having a party and needs party hats, or just for dress up!! Or if you'd like to order one and have it sent to someone for their birthday. Wouldn't that be fun to get!

So, it kept my mind off waiting for the results from the EEG with sewing and taking care of my sister who had her hip replaced last week. Can you believe they have you up and walking around in 24 hrs after your surgery? YEA they do!!!

There are some photos of our EEG experience. They don't differ much from the last 800 times we've had it done. He still cries and gets all heated up. This time the technician took FOREVER to get him hooked up. Then after she wrapped his head all up, she found that she missed putting one of the electrodes on and says "oh we'll just put this one right here behind the ear" and she glued then TAPED it on his hair. I always thought that they had to go in specific places and just just stuck where ever you want!

Monday, January 12, 2009

Well currently I am sitting across from Daniel who is laying in the hospital bed getting his VMR. (24hr. Video EEG). NOT FUN.

If you want a good laugh (to a not funny situation) find our other posts of our experiences with EEG's. Its a good chuckle to see if Lonnie, or if I will survive without killing each other. See adults can't sleep during this time. One of us has to stay awake to make sure if Daniel makes any weird movements that we hit the button to mark the video recording.

We're not sure if Daniel is having seizures or not, but this is the time that I am going to mash that button at any strange thing that I've seen him do. Anything that might even be questionable. This way I will know for sure in the end.

He is happy now as it lays in the bed with his orange pillow, his sock monkey pj's and his Elmo blanket watching Go Diego Go. This was NOT the case when we got hooked up to all the wires today. The whole time he was getting hooked up (which took FOREVER!) Lonnie kept mouthing to me as I was holding Daniel on my lap, "WE ARE NEVER DOING THIS AGAIN!" It is traumatic for Daniel (and us). It sucks to see him scared and screaming, with tears running down his cheeks cause he is not understanding why this person is doing this to him.

I think unless Daniel actually has a big seizure, or a notable one at least that this will be the last EEG we get for a LONG time.

Wednesday, January 7, 2009

Thursday, January 1, 2009

Today while putting Daniel down for a much needed nap, I watched him. I've been nervously lately that he is having some sort of seizures again.

I watched him look around, his eyes getting sleepier and sleepier, the blinking of his eyelids getting slower and staying shut longer and longer. Took him a while to fall asleep, he'd close his eyes and open then again just when I thought he was asleep and he'd smile at me, give a little giggle and close those big beautiful brown eyes again.

We were laying on our sides, face to face....I could smell his milky breath. His arm was slung over my neck because he was patting me on the back, just like I was doing to him. Made me smile, and I thought to myself, that I could stay like this forever. Nice, warm and safe, snuggling in bed.

While Daniel continued to snuggle down into his pillow, I could see he was deep in sleep. He must have been dreaming, as I could see his eyes moving around. R.E.M. And that got me thinking about what Daniel dreams of when he sleeps. Is he happy in his dreams? When he dreams, does he dream of himself walking or in his wheelchair? Does he dream he can talk? Is he able to communicate with people, and can they understand him? Does he dream of himself with a disability or does he dream of himself being a typical little boy? Running around chasing a dog, riding a bike, and playing in the house? Or does he dream of me pushing him in his wheelchair and carrying him everywhere in a world that just doesn't see past his physical disability?

I hope he dreams happy dreams, and knows that regardless of a disability or not, that I love him more than words can express.

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